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Phase: Top Ideas

I Know Something About This

Create a global, peer-to-peer learning system that taps all the experience individuals have from going through the end of life experience.

Photo of Jim Rosenberg
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Who is your idea designed for and how does it reimagine the end-of-life experience?

This concept is designed for people going through the end of life experience. It reimagines the experience as one that is intimately connected to the end of life experience of millions of others. It connects us to our fellow travelers and their stories, and gives us the chance to learn from their experience and wisdom.

The Challenge

The end of life is a universal experience. Yet when you are in the experience it feels like alien, uncharted territory. Everything is new -- the emotions, medical questions, financial worries, family communication, legal requirements, you name it -- even though literally millions of people have stood in your same shoes before. How can we learn from everyone who has gone before us and break through the sense that we are in this alone?

The Concept: A Peer Learning Platform Built on Storytelling 

"I Know Something" (IKS) is a peer-to-peer storytelling platform built on short, first-person video stories and simple reflection exercises. It opens a connected and very human door to learning in an often overwhelming, confusing, and emotional experience. The personal stories, links, and exercises help people understand what is happening, reflect on their own experience, and make great end of life decisions for themselves.  

The Prototype 

We created a working prototype for the Challenge that included six sample stories from peers and from me (an example is embedded below). We continue to work on the service. You can explore the latest version of the IKS site to see where we are, volunteer to share a story, or join our working community. The site works on mobile and desktop. 

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Lessons from the Refinement Phase

We used the prototype to explore IKS with several groups including people who have been through the end of life experience, healthcare professionals, support and therapy experts, and fundraisers (as an initial proxy for donors). We  also worked with individuals to create video stories and learn from planning, capturing, editing, and adding exercises to their stories.

The overall reaction to IKS has been fantastic:

“I think the idea is ridiculously good and has amazing transformative potential."
"Love this idea. Intimate; personal; non clinical; accessible; helpful; provocative; supportive."
"It's excellent. The cult of silence about life limiting illness and death creates a great deal of unnecessary suffering which can be alleviated by people learning from other's experience, and just having permission to think and talk about these issues."
"Great idea! ... to know that the stories and faces of real people going through it are right at your fingertips when you're ready to see them is priceless."
"I spent hours researching about Fibromialgia and found thousands of websites with cold, raw information. This website is like a bowl of hot soup on a cold day for the heart."

You can dig into all the details of what we learned using these documents:

  • Lessons from the Refinement Phase: This document summarizes key findings and includes detailed notes on the feedback we received. It also describes the approach we took to the Refinement phase and the specific activities completed.
  •     Feature and Enhancement Ideas: This document summarizes all of the ideas we heard for features and enhancements to the prototype.


We created some tools to help us collect feedback from the community during the challenge. We would always love to hear more reactions. You can use these tools:


Next Steps

The IKS concept can be developed in lean, iterative steps. The system can be delivered using off the shelf services and technologies so we can jump quickly into new tests with stakeholders. The breadth of content, number of stories, number of users, and user experience can all be expanded step by step as we learn more and more about the community and its needs.

The next step is to move from discussion of the prototype to working with families and caregivers to keep improving the service. There are two paths for this next stage -- one working in partnership with a healthcare provider, the other working with a more diffuse community online.

Details, Notes, and Other Learning

The following documents provide more detail on the concept, experiments, and learning about this concept.

More About the Concept (Updated 7/8/16)

IKS uses personal, human stories to show us we’re not alone and help us understand the end of life experience from the perspective of people like ourselves, people living through the experience. Click here to read a more detailed introduction to the concept.

A User Story (Updated 6/24/16)

Take a closer look at what the experience might be like for a couple who is suddenly facing an end of life experience. IKS gives them a community in which to start making sense of all the questions they now face. Click here to read the detailed user story.

User Experience Maps (Updated 7/6/16)

Roles and Relationships: There are a lot of different people who fill different roles in the end of life experience. Take a look at this document for an overview of the roles and relationships we want to consider.

Key Moments: There are critical moments in the end of life experience where peer stories could be especially helpful. These moments can provide a focus and an armature for building out the IKS collection of lessons. Take a look at our experience map of end of life moments. This is far from a complete map. You can  check out this Google sheet of moments and add your ideas as comments.

The Primary Caregiver: The experience for each role in the end of life experience is different. This document looks at the experience map for the person who serves as the advocate and primary caregiver for someone who is dying.

Additional Experience Maps: We will create additional experience maps to understand the journeys for all of the people who will interact with the system.

Want to Learn More?

We are building I Know Something into an ongoing service for families going through advanced illness and the end of life. We continue to use human-centered design to learn and inform our solution. We would love to talk with you more about the service. Please come visit the I Know Something site and sign up to stay in touch!

What early, lightweight experiment might you try out in your own community to find out if the idea will meet your expectations?

Use a very simple mockup of a site / mobile experience to 1) ask "survivors" if they would want to share stories and why / why not, and 2) ask behavioral health professionals if they would want to augment stories and why / why not.

What skills, input or guidance from the OpenIDEO community would be most helpful in building out or refining your idea?

1) General reactions -- what strengths and weaknesses do you see? 2) Volunteers to do a Skype interview with me to generate a peer story for the prototype. 3) Connections to palliative and hospice care professionals for interviews about the concept. 4) Interaction design and web development 5) Video production (interviewing, editing)

Tell us about your work experience:

I've worked in tech consulting, tech startups, and nonprofits across several sectors. For the last three years I've been providing strategy, innovation, and new business development consulting to mission-driven organizations. More detail at https://www.linkedin.com/in/jimrosenberg

This idea emerged from

  • An Individual
View more

Inspired by (3)

Video Tools from ACP Decisions
Video Tools from ACP Decisions
A web-based matchmaking application for connection and support in the dying process
A web-based matchmaking application for connection and support in the dying process
Treating death as a part of life instead of an event outside it
Treating death as a part of life instead of an event outside it
View more

This inspired (2)

Respite Care Share [Updated 8.22.16: Added testimonial examples]
Respite Care Share [Updated 8.22.16: Added testimonial examples]
Respite Care Share: Next phase goals [Updated 8.28.18]
Respite Care Share: Next phase goals [Updated 8.28.18]

66 comments

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Photo of Victoria Perroni
Team

Dear Jim,

What made you decide to tackle this specific problem? I have to say, I was not aware of this market before reading this article, but what you’re doing is impressive!

Two questions. How do you plan on sustaining this project past the years you spoke about above? Is this something that you plan on growing nationally and possibly internationally? Good luck on future endeavors.

Sincerely,
Victoria

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Photo of Jim Rosenberg
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Hi Victoria,

So, I Know Something grew out of my experience with my wife's cancer and her death in 2011. She and I used to talk about how fortunate we were, even in that horrible moment, to have the things we did have: good health insurance, a flexible job so I could take care of her, the education and experience to navigate the health system, supportive and available family, and more. So many people are forced to deal with so much additional suffering because of how we as a society do and don't support each other during illness, trauma, and loss. All of which left me with a desire to do something about those additional layers of suffering. The specific idea for I Know Something, the focus on difficult decisions, and the focus on all the ways we come to "know" (not just cognitive knowing, which is the focus of most health information) grew from my professional experience in peer learning and my personal experience in grief communities.

I would love to see I Know Something grow to be a national and global resource. I pushed on the idea a lot last year to learn from people, develop partners, build a simple prototype (www.iksproject.com), and work out the business model. My preference was to build the initiative as a client services business (healthcare providers hire us to capture stories that support their target community and most critical care decisions) but I found that to be a tough sell given the priorities and structure of our health system. I think the most reasonable model is as a consumer facing business, with investment up front for a few years to build sufficient scale, then revenue on the back end from participant contributions, referral fees, sponsorships, content licensing, and content production services.

Thanks for asking!

Jim

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Photo of Jim Rosenberg
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Hi Catalina De la Rocha Jan Rohwer Bettina Flieger Ivor Williams Paul Ennis Lee-Jung Kim Mansoor Fassihi Thouraya Safes Becky Lee --

I hope everyone is doing great! I'm continuing to work on building IKS into an ongoing initiative and I wanted to reconnect with everyone.

I found working with the OpenIDEO community incredibly energizing and thought provoking. I want to build a great community around IKS too as I move forward. People who care about the issue and want to stay in touch, maybe share a story, talk through ideas, provide feedback, or even volunteer to take on a task such as interviewing someone. I really believe open innovation works and I want to stay open to all the creative people around us.

Would you like to be part of the community as we get going? There's no big commitment required -- I can keep you up to date on what we're working on, and you can jump in at whatever level works for you. If so just shoot me a response here or LinkedIn works too (www.linkedin.com/in/jimrosenberg/).

I've just started to reach out to people now. Once I have a group together, the first step will be to talk about what platform we use to stay in touch e.g. a Facebook page, LinkedIn, a Google group, Slack, Trello, or something else. In the spirit of design thinking, I'd rather talk with the group and make a choice than guess up front :-) Let me know what you think. I hope you'll join in! And all my best!

Jim

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Photo of Lee-Jung Kim
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Jim Rosenberg This is a great idea! I am a sucker for an opportunity to do more design thinking especially with those who are passionate about social impact! Count me in. I love IKS idea! The idea could be applied to other social aspects as well.

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Photo of Catalina De la Rocha
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Beautiful idea. I talked to my mom about this (you can check the Google Form) and from our conversation we think it's great for the first weeks after you realize an EOL experience has arrived to someone you love. It's a safe and friendly place to go before spending hours reading about a disease or condition in unreliable websites. 

I would personally suggest adding some accesibility options to ensure everyone can receive and share stories, specialy because people using the website will have different ages and disabilities.

-Video Captioning (  https://www.amara.org/es/  allows the community to caption the videos ) 
- Font size and High Contrast contoller ( check out http://www.floeproject.org/ ) 

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Photo of Jim Rosenberg
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Catalina -- thanks so much. And please thank your mom for me! I love the feedback and can't get the statement "This website is like a bowl of hot soup on a cold day for the heart" out of my mind :-) I will add in your ideas on accessibility -- I hadn't thought about that and it's a really great point. Thanks again!

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Photo of OpenIDEO IDEO
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Congrats on being a Top Idea, Jim! It's been absolutely inspiring to see how you've developed I Know Something About This to re-imagine the end-of-life experience for ourselves and our loved ones. What an amazing journey it has been. In the coming weeks, we'll be making an official announcement to celebrate you and the other Top Ideas of the End of Life Challenge.



In the meantime, we would love for you to share your story in the upcoming End of Life Impact Phase. The Impact Phase is a space where the OpenIDEO community can share updates on how our projects are progressing beyond the challenge. For reference, here's a template for writing an Impact phase story:http://ideo.pn/1U9DrSN Well done Jim!

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Photo of Lynn Lambrecht
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Jim,
Love your concept!  Are you considering including the "practical resources" we use to protect us/our loved ones?  This is the gap I seek to fill with The Living Planner™.   Let me know if you'd like to brainstorm!  Lynn

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Photo of Jim Rosenberg
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Thanks Lynn. I think there are a lot of "moments" where this peer learning / storytelling platform could engage people. Lots of those are in the thick of the end of life experience (e.g. diagnosis, prognosis, first treatment decision...) but others are in everyday life (e.g. those moments when we think about our mortality such as the birth of a child -- now someone depends on us -- or the death of a parent). I imagine starting with a focus on the acute moments (fully untested assumption there about what people will most want :-) and I love the idea of using the platform as a way to connect people to "practical resources" too in other moments. I need to organize my thinking on next steps, but would love to brainstorm a bit too.

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Photo of Lynn Lambrecht
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Jim,
As someone who has been in the thick of it (end of life) with my parents and in my emergency response mode, I have many thoughts about this for all of us :)  Happy to talk/brainstorm.  My cell is: +1760.484.8675.  Lynn

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Photo of Jim Rosenberg
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Thanks Lynn. I'll definitely follow up. And if you want to, you could record a 2 minute story from your own experience to add to the prototype site too :-) In my demo post I talked about death at home -- maybe you have an experience around that too that could be a second story? If you're interested, you can access the site at www.eol.510square.com. No pressure, appreciate the brainstorming too!

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Photo of Lynn Lambrecht
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Jim,
Your death at home video is beautiful.  So real, no "clinical feel" for me.  Am "noodling" my story, as I've had so many relating to death (crash sites and my family).  Have some time for creativity tonight.  I'll be back.  Lynn

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Photo of Jim Rosenberg
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Thanks Lynn, that's really helpful. And thanks for noodling on a story of your own. I'd love to add the story, and just learn from your experience thinking about sharing a story (how did you decide what to talk about, how did it feel to think about / make a video, what was it like to figure out your "story line," etc.). I'll follow up with you to learn more.

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Photo of Jim Rosenberg
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Lynn Lambrecht -- Lynn, I'm so sorry I haven't managed to get our interview edited and posted yet. I got a bit buried with work. I love the stories you shared and am going to get them added to the site as quickly as I can! Thanks again for the time and your help!!

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Photo of Lynn Lambrecht
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My pleasure Jim!  Your work is amazing :)  Let me know how I may continue supporting you!  Lynn

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Photo of Jim Rosenberg
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Thanks Lynn! And the first video from our interview is now up on the site. Thanks again!

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As we're wrapping up the Refinement phase I just wanted to say thanks to all of you for all the help building this concept. The comments, emails, interviews, and feedback from your networks and colleagues has been amazing. I look forward to keeping this going and continuing to pester the community :-) Thanks!

Ken Rosenfeld Morgan Meinel Michael Flatkin Bettina Fliegel Ivor Williams Marsha Hurst Paul Ennis Torrie Fields Lee-Jung Kim Manny Fassihi Lynn Lambrecht Thouraya Sayess Becky Lee Joanna Spoth Shane Zhao 

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Photo of Morgan Meinel
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Jim Rosenberg - it has been an absolute pleasure helping with this remarkable idea! Please don't hesitate to let me know how I can be of further assistance! :)

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Photo of Paul Ennis
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Ditto. This has been an amazing few months for all of us. Stay strong. - PWE

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Photo of Bettina Fliegel
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Hi Jim.  Good luck as you continue to build the project.  There is so much great work and feedback so far!  
Bettina

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Photo of Ivor Williams
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Clarity needed in separating content made by carers/ friends /family from patients. While patients might benefit from the videos made by carers/ family I think there needs to be a filter so this choice is explicit. This might be obvious in the collections/ stories sections.
 
I like the ‘thinking about your situation’ but I think the format could do with more animation or creative template – looks and feels a bit homework currently.
 
The ‘explore further’ section under each video needs to consider equality and diversity issues – ‘universal concepts and experiences’ is problematic in relation to faith and ethnicity.
 
I think there also needs a risk and safeguarding consideration regarding users who may be choosing to end their lives and those grieving. This could be easily managed by a link to further support but raises issues around universality and where support would be located geographically – e.g. Samaritans UK.
 
As an addition a translator/ language feature would be amazing. Being able to access videos in other languages or transcribed content in range of languages.

[Contribution by Anny Ash, Macmillan Social Prescriber Senior Navigator, Macmillan Cancer Support]

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Photo of Jim Rosenberg
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Ivor Williams , Anny -- thanks so much for these thoughts. Very, very helpful. A couple quick thoughts, and I'll add your feedback into the concept documents too.

-- Right now search and browsing is basic, but I think advanced search would help with some of the questions about who sees what information. Those who want to focus on content just from other patients, or by gender, religious belief etc. should be able to do that through search options. People perhaps could set default preferences with their profile too. 

-- The question about how to handle the topic of right to die is a great one. It seems like a great idea to be able to filter those stories in the advanced search. It seems like setting a default on the user profile could be important for this too.

-- Figuring out the balance between universal / generally useful exercises and links,  and very diverse / highly specific support content is a good challenge. My goal is for the *stories* themselves to be diverse -- from different ages, ethnicities, races, socioeconomic class, religions, etc. -- and that is where the diversity and specificity comes in (the prototype doesn't have that diversity yet). People can pick stories they want to hear, that are meaningful to them, and the exercise and links for each story would then relate to that story (so they are about the underlying concepts in that specific story, not "universal"). For example, the exercise for someone telling a story about how their religious beliefs played into a moment for them would be very different than the exercise for a story that doesn't bring up religion. I've also been thinking a bit about how the system could offer different types of exercises branching off of a single story. I need to work more on the UX to support something like that.

-- Love the idea for translation and the thoughts on visual design / "personality".

Thanks!!

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Photo of Jim Rosenberg
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Hi, just wanted to add to my earlier comment. Search and filtering is one approach for the range of content and I've been planning for categories for the "browsing" path. Your comment made me think more about the value of categories. They also let us signal the range of conversation that this community wants to include -- not just survivor focused content but also allowing and incorporating end of life conversation that isn't welcome a lot of places. I'll play more with how to surface the categories to use them in this way. Thanks again for the help. 

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Photo of Bettina Fliegel
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Hi Jim. 
This looks interesting and related to what you are doing here.
livingmyculture.ca/culture/

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Photo of Jim Rosenberg
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Thanks Bettina. This looks interesting. I'll dig in and see what I can learn from the site!

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Photo of Marsha Hurst
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Jim,
I was looking at your experience map and thinking about how many times I read or hear stories told by caregivers about a loved one's end of life experience that describe a "cascade of interventions" (phrase borrowed from childbirth literature, but it fits) that the caregiver--even those who are professionals themselves--feels powerless to stop.  These are treatment, testing, medication, interventions, but they are also situations in which a person at the end of life is "turfed" from nursing home to hospital to rehab to nursing home over and over again.  I wonder whether "mapping" these stories you are gathering would add another dimension to your project: the map itself would identify places where caregivers could change the story.  Experiences of others would be helpful in this, but even visually seeing where the "cascade" could be halted or diverted, would enable us to at least ask the right questions at the right time.  My mother's real decline started with hospitalization for a fall.  She was not injured but by the time she spent 12 hours in the emergency room, and a week in the hospital for various minor problems, she had lost ground physically and cognitively--ground that, because she was in her 90's, she never recovered.

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Photo of Jim Rosenberg
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Marsha, thanks so much for your thoughts. And for sharing your story about your mother -- I'm sorry to hear that. This "cascade" is a really important issue. I've heard something similar, in different words, from palliative care doctors -- how once the relationship gets set up on certain terms, on terms of "hope" and "fight" and "treatment" it is really hard to change roles and relationships and expectations to something else.

I imagine over time, as we get more stories, we will be able to see patterns like this in the overall experience. I like the idea of visualizing the cascade. We might also be able to build "meta-stories" that link together several individual moments / stories to teach about this cascade and help people think about how they want to manage that challenge.

I'll add your idea / provocation to the concept notes. Thanks again!

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Photo of Paul Ennis
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Jim - This is a very cool concept/idea. It seems like it might benefit folks in two ways. 1 - Just to tell their story and feel like they have been heard. 2 - To have others learn, be inspired, be comforted, etc., by their story and life experience. The infrastructure/back-end website/database, etc., may be a challenge to set-up and maintain ongoing. More will have to be revealed as the ideas keep flowing. BTW, if you'd like to add me/HDCR to your team please feel free to do so. I believe HDCR could provide increased visibility, public awareness, networking and cross-pollination to your efforts/ideas through the programs, website, YouTube channel, twitter feed, etc., that are being created at this time via Home Death Care Resources. Your thoughts? - PWE

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Photo of Jim Rosenberg
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Paul -- thanks for the feedback. The benefits you point out are what I've been hearing in my conversations too, which has been great. The online service will definitely require investment and management over time but what's nice is that the tech (and the investment level) can evolve as the service grows. It can start off focused on a simple experience and using readily available tools, and when / if the site grows to the next level we can make further investment. It fortunately doesn't require intensive upfront development. I'd love to keep HDCR / you in mind for marketing and visibility as I get to that point in the puzzle -- thanks for offering!  

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Photo of Joanna Spoth
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Hi Jim! I wanted to quickly share some feedback we recently received from our sponsors and advisory panel: "The creation of a platform that connects people who know little bit of lots of little things, is so wonderful. The accumulation of knowledge about particular treatments, therapies, wellbeing exercises, focused around death would be a great resource. There are so many people who have experiences that are not relayed to others, and given the right structure, it could be a real benefit for people. This would be great to develop to the next stage."

Look forward to seeing your idea evolve during this last week of the Refinement phase!

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Photo of Jim Rosenberg
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Thanks for this feedback Joanna Spoth . This is  great! I've had some great conversations with people who have been through the experience, storytellers, palliative care professionals, and a few others. Also been working on development questions in general. I'll start writing up the thoughts and add them this week. 

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Photo of Torrie Fields
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Hi Jim,

A couple of thoughts:

1. As someone who is a "survivor" I will tell you that the most powerful, insightful, useful information about my treatment came from those who "knew something about that". Bravo. Please connect with Diane Mapes (@double_whammied on Twitter) to discuss her and the thoughts of HICOR in Seattle about this idea having come up several times in patient groups. Absolutely a necessary resource not only at end of life, but through treatment. 

2. Activities and tips are useful and helpful. I would consider adding in self rated health quick quizzes or a place to log self rated health in the app. It helps with end of life mindfulness and ownership of feelings. 

3. As someone who works in palliative care (my other hat), think through a way for patients to give access to their stored stories to their treatment team. Sometimes patients can write for say things alone that they aren't able to share with a care team. This platform can act as a powerful connection tool for the patient with their care team in documenting their quality experience with end of life. 

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Photo of Jim Rosenberg
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Torrie,

Thank you so much for the encouragement and the great feedback. Huge help. I'll definitely reach out to Diane Mapes to learn from her. I really like your ideas for adding self rated health questions and using the platform to connect the patient to the care team. Perhaps an option for any person using the system could be to select others who can see the stories they have watched and their answers to exercises. This could be part of the person's profile on the system and then the person could click who to share an exercise with much as you click the audience for a Facebook post (e.g. private, care team, named group, public). I'll add these thoughts in the concept post. Thanks again!

Jim 

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Hi Torrie Fields -- I was wondering if I might be able to borrow your brain again :-) I've been talking with some folks in palliative care to understand more deeply the perspective of professionals. Ken Rosenfeld thought you would be a great person for me to talk with more. Would you be available for a phone or Skype conversation sometime this week (that is, during the Refinement phase)? I can sketch the questions I'd love to cover and send those over.

Thanks for considering this! We can coordinate through this site, or you can also reach me via email at jimrosenberg67@yahoo.com. Thanks again!

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Photo of Lee-Jung Kim
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@jim rosenberg I read about "Patients like me" and thought about your idea. Check out their webiste.
https://www.patientslikeme.com/
Although it is not about those who are dying, I thought sharing stories amongst those who are going through same disease touches upon some important aspect of your project.

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Photo of Jim Rosenberg
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Thanks Lee-Jung Kim this is great to see. I dug into the site a bit to learn more. Their primary focus seems to be data sharing and tracking, to provide feedback and support research. They have a comprehensive set of features for that. They have also built a large and active discussion forum, which is the most common form of online peer support I've seen.  I really like what they are doing overall and it's helpful to see the ways they have selected to organize individual submissions and support search across multiple dimensions. It's really helpful to learn more about how others are providing patient support. Thanks!

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Photo of Morgan Meinel
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Jim Rosenberg , I hope this finds you well! I have some interviews to share with you, but I'm having some difficulty opening up the google.doc sheet. Would it be best to email  the responses to you? Anticipated thanks! :) 

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Photo of Jim Rosenberg
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Morgan Meinel that's great. Sorry about the problems with the Google Doc / forms. You can definitely just email me. You can send to jimrosenberg67@yahoo.com. Thanks!

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Photo of Morgan Meinel
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No worries at all! I just sent them over :) 

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Photo of Jim Rosenberg
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Got the notes. Great stuff! Thanks so much!

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Photo of Morgan Meinel
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You're most welcome, Jim! )

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Photo of Morgan Meinel
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Jim Rosenberg - it's so great to see this brilliant idea of yours make it to the refinement stage! This really has the potential to help so many people during the end of life experience.

Jim, you had mentioned your uncertainty about getting access to those currently going through the end of life experience and about how you would feel about approaching them as research subjects. From some recent experiences on my Palliative Care Unit, I was hoping to offer some insight into this.

We currently have a documentary in progress on our unit on Palliative Care and the end of life experience. It has surprised me how many of our patients and their family members are willing to go on film to tell their story. As you know, time is very precious and of the essence during the end of life.  Naturally, there are many who choose not to do this, but for the people that do, they all have expressed that their motivation for having their personal story documented was primarily to help assist other people going through a similar experience. Many of my patients report that they have found much healing, self love, and connectedness to others through the process and it seems to offer a sense of completion and wholeness for individuals to have the opportunity to share their story. I believe if approached in a way that is supportive, many people would wholeheartedly be willing to talk with you. We have a great Palliative and Hospice Care Team at Mount Sinai that would be more than happy to offer anymore insight that may be helpful to you (myself included)!



Also, I wanted to offer my profound gratitude to you, for sharing your story of Amy. I imagine it has already helped so many others going through their own unique, yet similar experience of caring for their loved one at home.  If I may say, this is such a beautiful way to honor her life, by helping so many others through this remarkable idea. Wishing you all of the best! :) 

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Morgan Meinel -- Thanks so much, for the support and the very caring words and the story about how families have reacted to the documentary project. It's all a great help and a great encouragement. I'm smiling while writing this :-)

I'd love to talk with your team and you at Mount Sinai to learn more about patient needs and how IKS can fit in. I could put a few questions together for an interview. Do you think we could arrange a time for a group discussion online / phone, or some 1:1 calls? Or would you want to ask some of your colleagues the questions yourself and just send along what you find out? I could also send the questions as an email or simple online survey form, and folks could write responses. Whatever fits best with your environment there.

A second idea that would be amazing: do you think you have a few patients or families that might be willing to take a look at the site and my example video / exercise, and just share their reactions? Again, I could write down three questions to ask to help get feedback. Would that be appropriate? Is that something you could do?

Okay, I've now asked for lots of things :-) I *completely* understand if this isn't possible. Thanks so much for the help already and for considering these too.

Jim

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Photo of Morgan Meinel
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Jim Rosenberg  , Thank you so much for your thoughtful response! I would be honored to help assist and support your project in any way I can. I would most certainly be happy to talk over the phone with you, and I will reach out to some of my co-workers and nurse manager tomorrow about the possibility of you interviewing them as well.
From my experience, an email survey would probably not get you the quickest response. I think you would probably get the quickest and most responses if I were to ask the questions directly to my colleagues and have them write down their responses. 
I am back at the hospital tomorrow (7/14) and will also speak with my nurse manager about the possibility of getting our patients and their families involved. I feel optimistic that this could definitely be a possibility and I will certainly keep you posted. 
Jim, please don't hesitate to let me know if I can be helpful in any way in the meantime. So happy to see this wonderful project making progress! :) 

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Wow Morgan Meinel that's great. It sounds like the best / fastest way to get feedback will be through your conversations with peers and / or patients. Thanks again! I'll put together a simple intro to the idea / site and three questions that you can use for talking to people and send that over, and we can see if that works. 

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Morgan Meinel I put together a simple interview guide to support talking with care professionals, patients, and families. Hopefully this helps (and is simple :-). Let me know what you think. I'll also post it in the concept so it's easy to find.

Interview Guide:
https://docs.google.com/document/d/1GPO4ripJ7l5oDEc5jxXCoKgHrH3BpXkji1lBD1ZVNvo/edit?usp=sharing 

Thanks!!!

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Jim Rosenberg , this looks fantastic! Thank you for your thoughtfulness in constructing this guide. I will be back on the Palliative Care Unit this Saturday and will begin the interview process. I will keep you posted!

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That's great! Thanks again. I'm really looking forward to hearing what you learn. I captured a video story from a friend about a moment in her end of life experience the other night. I had forgotten that she is also a NICU nurse. I ended up getting some great feedback from her as a professional too working with parents around the death of babies. Intense stuff and really helpful.

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It's a pleasure, Jim! I'm happy to help :) I'm so glad to hear that you were able to talk with your friend about her own personal and professional experiences. I'm sure her insights and feedback were valuable. NICU nursing is so admirable; bless her!  Jim, I've already got some great interviews and feedback underway and will be sending them over to you this weekend! All the best to you and please let me know if I can be helpful with anything else!

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Hey Jim Rosenberg , 

Great idea! This has the potential to really make the end of life experience more universal; that is, to bring people out of their sense of alienation (that this is only happening to them) and, in doing so, cultivate compassion for other EOLers and grievers. That's how I see the site, first and foremost - as a tool for compassion. To hear other's experiences in their most vulnerable moments - while and after losing a loved one - creates such intimate and precious bonds that would otherwise not happen. 

Of course, it is useful at all stages of the grief cycle (denial, anger, depression, bargaining) and enable people to come to a space of acceptance, though as your user experience map acknowledges, the denial, anger, and depression stages will be the toughest to reach and engage users. 

I wonder whether there's a way to:
(1) include some sort of curation or orientation for the user experiencing the loss. I imagine that once the stories accumulate, users may potentially be overwhelmed by the amount of content and grief present. Perhaps on the landing page for the user, there could be a simple typeform survey that would help guide them based on where they are and help them navigate the content. 
(2) help users be okay with the ambiguity of loss. I've found personally through my own losses that there's no real resolution - there's a pained love that resides and lingers and that I may never understand. And that's okay. You may find this OnBeing episode on the "Myth of Closure" useful: http://www.onbeing.org/program/pauline-boss-the-myth-of-closure/8757

Be well, 
Manny

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Manny,

Thanks so much. I really appreciate the support and the thoughtful feedback. One of the things I really do love about this idea is that it can cultivate compassion and empathy and connection. Personal stories and video are really powerful that way. We need that compassion and connection in general these days, and especially during loss. 

The needs for curation or navigation tools once there is a lot of content is a great design question. I'll add it to the list of design ideas in the concept -- this is a really good one. 

I love the idea of extending the service to support grief too. It's really a natural fit for that part of the experience as well. I think it would be powerful to see and share personal stories about the ambiguity of loss, the idea of resolution, and ideas about closure. One of my big discoveries was that, for myself at least, grief isn't a healing process that moves from death to some eventual conclusion, it is a metamorphosis that makes that death part of you and changes how you live in the world. Hmmm, maybe I need to record a video story about that...

Jim 

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Hi Jim. 
Do you see clinicians participating in making videos, sharing tips, or sharing stories about families and patients they have served?  Ex - Your video - What if a clinician shared a story about asking what someone in your position wanted/needed, and what the conversation was about? 

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Hi Bettina,

I'd love to see clinicians participate too. Clinicians see and learn from so many people going through the end of life experience that they are a great source of insight. There were a lot of examples in the Inspiration phase of this knowledge -- it would be amazing to surface all that learning. I could even imagine clinicians using the site to learn from each other (maybe that's a filtered view of some sort -- a "professionals" site aimed at peer professional learning).

The example you gave is great -- there could be a lesson there from something unique or insightful the clinician heard from the patient, and / or a lesson about how to talk with someone about the question. Want to give it a try and share a story yourself? (I can't help but ask :-) 

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Jim Rosenberg Love your idea and the multi layers that come with it! Good luck!!

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Thanks Thouraya!

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Wow, at first I thought you were highlighting an existing platform until I realized you had actually created these beautiful mockups. Love it Jim! In many ways, you've been prototyping this idea throughout this challenge with your "First Person" video interview series. We've definitely received a lot of great feedback about how the First Person series not only shares personal experiences from people, but it also gives viewers helpful advice and learnings that they can take into their own experiences with death. 

I also love the Thinking About Your Situation feature. We often don't take the time to sit down and reflect on our own fears with death and the loss of a loved one. Do you see this as something that may become more than a storytelling platform? Looking forward to hearing more about your steps Jim. Perhaps we may even see a live version of this site with the First Person stories that you've been collecting?:)

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Thanks Shane. So there is a partially functional site behind these mockups. I had been working on a peer-to-peer learning model last year focused on overcoming the barriers I've seen in learning from each other in professional communities (e.g. the challenge in explaining why you did something vs. what you did, the implicit stack of knowledge that is behind the case stories that get shared, the difficulty of translating an experience from one context into another...).  I had also explored a bit around how the learning model could help people with the grief experience. The Inspiration phase got me thinking about how the right kind of peer learning and storytelling experience could make a big difference in the end of life experience.

I'll think about how this could grow beyond a storytelling platform. I do think the storytelling model could be a really effective vehicle to help people to make more satisfying decisions about their own experience. We could see real changes in how we approach end of life medical decisions, deal with dementia, even think about dying with dignity if each of us had the opportunity to learn from the real human experience of our peers. Perhaps the platform could become an anchor for a collection of services, once the community is connected. Do you have ideas about those additional directions?

And I'll see if I can mockup a full site with the First Person videos :-)
 

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Jim,
This is such a well developed project! I really enjoyed reading through your thought process and design.   From your text -  "Everything is new -- the emotions, medical questions, financial worries, family communication, legal requirements, you name it..."   So true. 
I really like the reflection part of your model.  I think that will be extremely helpful as folk work through all of these new issues.

I like the idea of expanding on the storytelling in this project. 
1 - One thought is to provide templates for "Action Plans" that folk can use as they recognize their needs and get inspiration or practical information from other's stories.
2 - Regarding whether professionals might be interested in curating discussion, or providing links to information, literature on issues that arise - maybe Elizabeth would have thoughts on this? 
3 - I am feeling inspired by the idea of "Creative Expressions" from the Inspiration Phase, and by using a music streaming service for the first time.   It is fun to explore the service which has text,  playlists to choose or to make,  and variety of visuals / art- ?cd art and videos etc.
  How might it work if there were options for users to upload  "Creative Expressions" to share as well as sharing stories?  Might a user choose to post a visual that they create alongside their audio, if they did not want to share their own image? 
4  - How about providing a template for users to share thoughts and ideas on how they are enjoying  and engaging their "senses" during end of life? - Sight, Hearing, Taste, Smell and Touch.   Might posts inspire others in the community as they continue living well, through their end of life?
5 -  Reflection and writing can be a therapeutic tool.  Might this something to think about as an expansion of the app? (maybe not)

Excited to see where this project goes!  Good luck!

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Bettina, wow, thanks for the encouragement and the really great ideas here. I'll update the post to start capturing these extension ideas. The Action Plans seems like a great way for a family or a person to sort out what they want to do, and could also provide a bit of a template / guideposts for this (often overwhelming) experience. Connecting creative expressions seems wonderful too -- I know Amy, my wife, found comfort and a feeling of connectedness in the writings and music recommendations friends sent her from their own experiences.  

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Hi Jim.  I am sorry to hear about your wife.   For people who create their own writing and art can this platform be a way to share it?    https://www.youtube.com/watch?v=sDC97j6lfyc

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Thanks Bettina. 

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What a beautiful, yet practical, idea. I think in difficult times, we often find comfort in being able to help others, so it is truly a win-win situation to connect people who are going through (or have been through) similar experiences. Hearing someone else articulate what you're going through, or just say what you needed to hear, even if you didn't know exactly what that was, can be really powerful. 

I'm also inspired by the guided reflections. Making sense of what you're going through and the unknowns that you're facing can be half the battle and seems like the first step toward finding comfort and/or answers. 

I'm really interested in how some of these strategies to connect people around end-of-life could be used to more broadly connect people with their loved ones even before the end-of-life experience comes into the picture. Your idea has already helped me build on my own idea to build in moments of deeper connection in life to ease anxieties around end-of-life. Love to keep the conversation going and think about spaces to collaborate and share! 

https://challenges.openideo.com/challenge/end-of-life/ideas/going-deep

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Thanks Becky. I really appreciate the feedback and encouragement!

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Jim, this is an extraordinary idea and project! Wow. There can be so much fear of the unknown during the dying process, and your project provides such an intimate and accessible way to connect people, support them, and normalize difficult emotions, questions and concerns that accompany this chapter in one's life. I love the idea of storytelling as a method for understanding, connectivity, and healing. 

I think it's really important that you mention healthcare systems having the opportunity to save and potentially avert futile treatments and unnecessary suffering by way of people understanding the end of life process and ultimately making better decisions about end of life medical care expenses and experiences. Great point.

When reflecting on my own personal experiences with grief, death and dying, and other life challenges - one of the strongest emotions I experienced during those time was loneliness and lack connectivity or intimacy with others. My greatest comfort was found in the support of other people - especially those who has been through similar situations. 

Loneliness, isolation, and fear of the unknown seem to be very universal experiences of many of my patients and their loved ones on the Palliative Care Unit at Mount Sinai. When we as a team find ways to connect intimately with them, guide them, and communicate that their suffering doesn't have to be carried alone, I believe people find great comfort in that. In my experience, several of my patients and their families have found comfort in one another as well - in sharing their own personal stories and accounts. I imagine this could be very healing for the person sharing their story as they are using their personal experience of loss to assist others going through a similar difficult experience. Connecting with others in this way is so meaningful. 

I really look forward to seeing how your project unfolds - Countless people could benefit from it! 

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Morgan, thanks so much! I'm really excited about this idea, about how it could connect people, and your enthusiasm and support is just great to hear. Your comment "When we as a team find ways to connect intimately with them, guide them, and communicate..." connects with another conversation I had today and makes me think of something I had not considered: caregivers will have amazing and helpful stories to share too, not just families and friends and those who are dying. It would be really wonderful to tap into those stories too. Thanks again! 

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Congrats on this being today's Featured Contribution!

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